Living with Lupus, My Personal Story

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Living with Lupus, My Personal Story

By: Lisa Maria Datcher

I have made a commitment to myself that I would do everything in my power to raise LUPUS awareness so that more funds can be allocated for research study and ultimately the cure for this disease.

The following text is not filled with flowery words and beautiful imagery. It is however; filled with pure emotion from my heart with the hopes that you will feel just a pinch of what those of us who suffer from this disease feels each and every day. We have lost and will continue to lose our loved ones to this mysterious disease unless a cure is found soon. Please, take a moment to familiarize yourself with what this disease is and the pain it causes the sufferer and their loved ones. Chances are, you know someone who lives with or has died of LUPUS. Thank you and may God continue to bless each of you with strength and wisdom.

BEFORE DIAGNOSIS

It was 1993, Indian summer. A beautiful, balmy evening and I had just arrived to my mother's house after attending my best friend Donna’s baby shower. I was sitting down on the couch, Indian style, as I told momma about the baby shower. We talked for a few hours, exchanged good nights and I fell asleep. The next morning, I noticed an annoying ache in my ankles. I figured it must have been the way I sat the night before so I didn't think anymore of it. I continued my day as I normally would, making a mental note that this ache was still lingering. I asked momma for some aspirin and she asked me if I was ok. I told her I was fine other than these weird aches in my legs. I kissed her on her cheek and made my way to run some errands. I spent the majority of the day out and when I returned, I was extremely tired. I nestled on my favorite sofa again and fell off to sleep.

The next morning, I knew something definitely was wrong with me. I thought my neck had broken during my sleep because I couldn't move it at all. That is how extreme the pain was! I remember crying, actually shrieking out and seeing momma and my brother running into the living room where I was. They helped me get into an upright position and I remember the excruciating pain I felt throughout my body. My entire body felt so stiff – as if I had been in an accident.

Momma called my doctor and made an appointment that same morning. When I arrived, my doctor took my vitals and went through the mundane routine of a doctor's visit. He asked me if I had any changes in my health recently. After thinking about it, I told him that I noticed that I had been feeling unusually tired and that I had aches in my legs from time to time. I recall similar aches since the 7th grade because I used to run all of the time. I just figured I was tired because I was an active person. He performed routine lab work in efforts to try and pin-point the source of my problem. He said that he wanted me to take some time off so that my body could get adequate rest.

At that point, I became nervous as hell because nobody could or would tell me anything concrete. I was a stay in school student at the time and I started working part-time. I thought to myself great.... The school year is just beginning and now I can't go. Frustrated with the long waiting, I began calling my doctor for results. He said he needed to run additional tests because nothing was definitive. He managed to throw out two "possibilities" he thought may be the problem. Rheumatoid Arthritis and Multiple Sclerosis. I MUST be dreaming I thought to myself. This could NOT be! I was too young and too cute. I was in school determined to make something of myself so I know this couldn't be happening to me. No, not Lisa, not now! Mad as hell, I decided to give that doctor the boot and find another one which I did.

This new doctor of internal medicine also administered series of tests including lab work too. He told me that he wanted to pay close attention to the ANA test. I didn't know ANA from DNA, I just wanted to know what the hell was going on inside me and NOW! Two weeks had passed when the new physician contacted me to come to his office. I felt that sick feeling you get in the pit of your stomach when you know something is wrong. When I arrived to his office he gave me the news that changed my life forever.

Ms. Datcher, your lab results are positive for LUPUS.

LUPUS. LUPUS. LUPUS. LUPUS.

That word echoed in my head.

AFTER DIAGNOSIS

LUPUS. How in the world did this happen? No.! This quack is wrong! There ain't no way in hell that I have anybody's LUPUS and this sorry *&%^ is not going to make me believe it! I stormed out of the office in pain and numb. I headed back to my mother's house and learned she had already received the news.

Momma was always optimistic so she had already planned how everything was going to be alright. Everything wasn't going to be alright. See, I had already researched autoimmune diseases and arthritis after the first doctor offered his "hypothesis". I read about symptoms, treatments and prognosis. Back in the day physicians gave LUPUS patients 10 years and BAM!! that was it!!-time for a permanent dirt nap. Fortunately, with technology and more advanced medicines available, the prognosis has changed for many LUPUS patients where some of them can live pretty normal lives. The doctor provided me with literature that illustrated what LUPUS is and what issues I may face with this disease

I have been hospitalized more than enough times for LUPUS related illnesses. The most severe being pleurisy and then pneumonia. The pleurisy episode was the worst episode I have ever had. Every time I took a step, every time I breathed- it was dreadfully painful. I had to drive myself to the hospital and I still don't know to this day how I managed to do so without GOD.

The triage nurse told me my temperature was 103.5 degrees and I was immediately admitted. After intense therapy of antibiotics and the steroid prednisone, I began to feel better.

The hardest thing for me upon diagnosis was accepting that I had to live with this. I denied it for a long, long time. Because of this denial, I would refuse to take the medicine because there was no way I was going to gain more weight. My stubbornness resulted in my barely being able to walk and care for myself. I tried with all of my might to fight this on my own but it was much too powerful. My efforts to return to school and work backfired in my face which led to depression.

I had to give up my apartment and move back home with my mother. Just as fast as I traveled to the top of the world or so I thought at a young age, I witnessed my world crumble right in front of my eyes and there wasn't a damn thing I could do about it but watch.

THE DRAMA

This part of my story is the RAW, UNCUT, UNEDITED VERSION of emotions worse and limitations I have experienced as a result of LUPUS. I feel compelled to be explicit about what I have experienced because I am sure other LUPUS sufferers share some of the same and some unfortunately have experienced much. Unless you have lived with the pain and limitations resulting from LUPUS, it is IMPOSSIBLE to "know how we feel". People who are ignorant to the disease may sometimes view the LUPUS sufferer as lazy and/or anti-social. THAT IS SIMPLY UNTRUE. Some employers don't understand and frankly, many of them don't care. We long for energy and stamina! We want to skip through the fields, play outside with our kids and enjoy all of the beauty life has to offer.

UNFORTUNATELY, this disease when active, limits what we can do no matter how much we try. I have had fits of rage, premonitions of death, voices in my head taunting me to kill myself. Sometimes I feel like I am in an emotional battlefield with no ammunition. I am unsure how I am going to feel from day to day and day to day I am afraid. I am afraid that at any given moment, my medication will no longer be effective and that I will be confined to my bed or hospitalized. I am extremely embarrassed when I am experiencing a flare because I hate to ask for help. Often, I secretly wonder if people notice when I limp or when I have trouble using my hands. There have been times that my hands were so swollen and numb that I could barely wash my hands or even wipe myself after I used the restroom. As I think back, I recall one winter night I thought I was going to freeze to death because I just could not get up to adjust the temperature. My blanket had fallen on the floor and the only comfort I had was a thin sheet that I managed to pull over me with my teeth. Driving was increasingly difficult during the onset of a flare as was getting in and out of the vehicle.

There have been times where I have literally fallen down in the bathroom and in the tub because I lost balance. My body is laden from bruises as a result of my falls. These feelings of helplessness disgust me with all of my heart because it takes me to a place I have tried to forget but can't. The place it takes me is my late mother's house-her bathroom to be exact. Crystal clear is the image of the awful, helpless look in my late mother's face when she became so weak she couldn't help herself and relied on me to wash and clean her. I reluctantly remember the look of shame momma had and the look of her not wanting to be a burden on me. I loved momma more than life but I hated her for being sick. I know that sounds harsh but it was the truth. I was angry at Momma for not being the Momma I remember. She too hated falling ill because she ALWAYS cared for herself and everyone around her. I simply LOATHED seeing her so weak and feeble and every time I hurt, I am reminded of that look in her face. Sometimes, I wished I would never wake up again because the pain is too much for me to handle. I feel like my dreams are merely pipe dreams. Sometimes I feel like I am the ugliest creature on earth with fluid pockets and fat everywhere. During flares my already thin hair thins even more. I look awful in my clothes and I sometimes won't go to work or out because I hate how I look and feel. I am afraid that one day I won't be able to work. How will I survive?

What benefits and resources are available and will they be enough? SOMETIMES I WOULD LOOK IN THE MIRROR AND I HEAR VOICES SAY LISA, YOU ARE A UGLY FAT LOSER AND YOUR DAYS ARE NUMBERED. Then the voices mock me and utter things like, WHO ARE YOU TRYING TO FOOL? YOU WILL NEVER BE ANYTHING! YOU WILL NEVER LOSE WEIGHT SO WHY DON'T YOU DO EVERYONE A FAVOR AND VANISH. NO ONE WOULD EVEN NOTICE YOU ARE GONE.

Then I cry. Sometimes I cry myself to sleep. Other times, I have to dope myself up with sleeping pills just so that I can go to sleep. Sometimes I am afraid to sleep and sometimes I am afraid to wake up. Please somebody help me.
Please!?!

COPING

It has been over 16 years now that I have lived with LUPUS. It has been like a pendulum from one extreme to the next with the flares and emotional roller coaster rides. There have been ups and downs, good and bad days, smiles and tears. I lost the desire to complete my college education-12 credits shy of my degree. I just could not muster the will to go back and finish. In hindsight, part of me is disappointed in my decision but I have to live with it and I can. I finally landed a position in my career field- investigations.

While I love it so, it can be very, very demanding. My doctor warned me long ago that if I did not let something go and get more rest my body would pay. He was right on the money. I can recall getting off from work and being too exhausted to drive home. I would park my car, lean my seat back and sleep. This was dangerous but it was not as dangerous as my trying to drive home in such an exhausted state. I have learned through therapy and faith that we all face trials within life and none of us, NONE OF US are exempt from pain and suffering. I continue my medication and have incorporated exercise in my routine. There are times when I don't have the energy to stay on the routine so I do what my body tells me to do and I rest. I continue to pray and stay as positive as I can. It isn't easy and there are times I slip and fall into depression. That happens and will continue to happen as long as the disease is active. I rely on my remaining family and best friends for support during rough times. To them I say “I know I have put you through changes but please, hang in there with me”.

Momma, I know you are looking down on me and I feel your presence urging me to stay strong. For you, I will! I won't give up without a fight. Just like you Momma, I will fight to the end. I will stay abreast of the progress of LUPUS research in addition to providing support to others who are living with this disease. It is my dream that one day, there will be charity walks and drives for LUPUS as there are for AIDS and Cancer. It is my hope to see more public announcements for LUPUS awareness.

Please, take time to learn about LUPUS.......
So we can find a cure for LUPUS...
Our lives are depending on it.

For additional information or to connect with others, please feel free to stop by my newly formed fighting lupus group at http://groups.aol.com/fightinglps. I can be reached at leesaleesa007@aol.com.

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